Where do we go from here?

***Warning: This post deals with the difficult subject of death.

I've been thinking about this post for several days now. Those of you who know us personally are aware of what has transpired with Ella's health during the last few weeks. For those who don't, to sum it up, we almost lost her on January 19th. As I write this we are still in the hospital but planning a discharge next week: we've been given a second chance.

When you're the parent of a medically fragile child, it's understood that they're mostly living on borrowed time. You never now how much longer you have left and the reality is that you will likely outlive your child...not something any parent wants to think about.

As the realness of what happened has started to set in following the fog of shock and disbelief I lived in for the first week or two, there are so many emotions running through me - gratitude, relief, sadness, and fear to name a few. The rollercoaster is moving so quickly now that I am constantly nauseous. How do I make it slow down?

I imagine it's just going to take some time, but I don't see how we can go back to normal. Things look so differently now.

It's always been in the back of my mind the very real possibility we will outlast her, but I've tried REALLY hard to not think about it too deeply. It's always been "down the road". I was not prepared for coming so close to losing her at such a young age or having to let my mind really explore the possibility...What would her funeral look like? What songs would we play? What pictures would we show? Where would she be buried?

Have I been too nieve thinking we had so much more time? Should I be preparing more both mentally and physically?

I want to give myself enough time to heal, but I don't want to dwell in it either. I think it's going to be a fine line. When I was pleading with God for more time with Ella, I promised Him that I would take whatever it was He wanted me to from this situation and use it in a positive way. So now I'm trying to figure out what that is. The sooner I do, the sooner I can start moving forward.

One of the moms in my online special needs parents group put it this way - our children are on loan to us from God until He needs them back. I guess all any of us can really do is love them as much as possible while they are here. I'm just not sure how I could love her any MORE than I already did.